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Graham
4th May 2011, 22:38
Hi All,

Chronic fatigue affects some but not all people with MND. At present CFS is my most significant problem.
My questions are: -
1. Is CFS my body battling with MND?
2. Are there any strategies to combat CFS?

Best wishes

Graham

Robyn Copley-Hirst
5th May 2011, 01:57
Hi Graham,

I hope we have some forum users who can share their thoughts and own feelings with you on this question. Others' experiences are often the most useful but do drop me a PM or reply if you would like me to ask Research if they have any information on this and I'll put your question to them.

Best Regards,

Robyn

ScrummyMummy
5th May 2011, 05:58
Hello Graham,

I was struck by CFS 13 years ago following a stressful time with my 3 year old son. At the time, it was thought by medics that CFS could be relieved by resting and taking life easy. This advise did not help me in the least as, a little like MND sufferers feel, my physical strength was So poor that I ended up in bed all day. No ammount of gentle exercise helped and when I tried to do anything physical, my muscles shook and cramped and I was soon chronically fatigued needing 3 hour sleeps.

The good news is that I did discover what was causing my symptoms and make a full recovery from it. It was caused by leaky gut thT gave me multitudes of intollerances to food and poor absorbsion of important vitamins and minerals. I can thoroughly recommend my homeopathic GP called Dr Avery. He practises from Winchester and is a fully qualified GP.

I took my mother to him last year when she was diagnosed with MND. He cannot offer any solutions to MND and my mother was not suffering with CFS anyway but he did discuss the importance of certain vitamins to the nervous system and did suggest some supplements. You might want to check it out. His practise is called The Natural Practise.

Good luck Graham

sarahezekiel
5th May 2011, 19:32
Hi Graham

I've experienced severe fatigue at different times during my time with MND. I find that if I don't eat enough I become very fatigued. And then I'm too tired to eat, so it becomes a vicious circle.

Also, if I'm not sleeping well I also feel very fatigued. So, from my experience, good nutrition and adequate sleep are very important to combat fatigue.

Best wishes

Sarah

Robyn Copley-Hirst
6th May 2011, 12:32
Hi All,

Chronic fatigue affects some but not all people with MND. At present CFS is my most significant problem.
My questions are: -
1. Is CFS my body battling with MND?
2. Are there any strategies to combat CFS?

Best wishes

Graham

Hi Graham,

Thanks for your email earlier. This may not help you much with number 2, but in terms of number 1 I do have some information from our research team below:

I do think that perhaps it's important to note that Chronic Fatigue Syndrome (CFS) is a separate condition with its own set of symptoms. However a lot of people with MND do experience fatigue as a significant symptom, even though they might not fulfill the criteria for a diagnosis of CFS.

A poster at last year's symposium presented a small study of people with MND's experiences of fatigue, and suggested that it manifested either as an inability to sustain muscle function following minimal use (ie an arm getting very weak from holding a book), or a pervasive 'whole body' tiredness that was unrelated to exertion or rest. Some people experienced difficulty concentrating. Stress, anxiety and breathingdifficulties were all associated with increased fatigue - these are factors that would increase fatigue in most people, regardless of whether they had MND. In the study, people felt frustrated that normal day to day activities were so tiring - brushing teeth can be exhausting if you're arm and hand muscles are not working properly. The study found that people who experienced fatigue ended up taking periodic rests and
planning activities very carefully.

As for number 2 and finding strategies to help, MND Connect would be more than happy to talk with you and see if there is anything they can suggest that may help, and I'm sure others here have found things that have helped them, too.

Best Regards,

Robyn

Graham
6th May 2011, 19:42
Hi Robyn,

Thank you for the feedback. I can better describe my CF as an overwhelming need to sleep. Typically I sleep 13 hours a day and for periods of days this isn't enough and I am groggy for the rest of the day. I have read other people's blogs who describe the feeling as 'brain fog'.

Best wishes

Graham

smithalan00
17th May 2011, 09:58
Although It is classified under Diseases of the nervous system It's cause is unknown.


Smith Alan

Graham
17th May 2011, 20:16
Hi All,

Thank you ScrummyMummy, Sarah, Alan for your feedback. From other feedback, here are some thoughts.

1. The function of the stomach/intestines muscles are degraded by MND resulting in a poorer uptake of nutrient.
2. The function of the lungs are degraded by MND resulting in a poorer metabolism.
3. Inflammation in the brain/CNS leads to more sleep and is fatiguing.
4. An active immune system requires more sleep and is fatiguing.
5. MND affected muscles require more effort in order to function.
6. Not able to sleep.

Best wishes

Graham

Graham
3rd June 2011, 23:20
Hi All,

This is the first authorative post I have seen that explicitly links Chronic Fatigue to MND like disease. Inflamation in the brain may be the lowest common denominator.

http://en.wikipedia.org/wiki/Myelitis

Best wishes

Graham

MND Connect helpline